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  • Jefferson Adams
    Jefferson Adams

    How Many Doctors Does It Take to Diagnose Gluten Sensitivity?

    Reviewed and edited by a celiac disease expert.

    Celiac.com 01/09/2015 - A recent article by Jody Berger provides a cautionary tale for anyone suffering from non-classic symptoms of gluten-sensitivity or celiac disease.

    Photo: CC--Waldo JaquithBerger, it turns out, has non-celiac gluten-sensitivity. Sounds simple enough, right? But in Berger’s case, it took her one year and visits to a dozen doctors to get an accurate diagnosis.

    Berger’s main symptom was tingling in her fingertips, a feeling of slight pins and needles, as if they were waking from a deep sleep. The sensation wasn’t painful, she said, but it was persistent, and concerned her enough that she sought medical help to figure out the cause.

    When her first doctor diagnosed her with multiple sclerosis after a very brief visit, Berger sought a second, then a third, then a fourth opinion. In the course of her many visits, doctors told her she had nutritional deficiencies, heavy metal toxicity, Lyme disease, and depression.

    After a dozen visits, she finally found an osteopath who was “well-versed in systems thinking,” and another physician who had trained in ayurvedic medicine, a holistic system of healing.

    The tingling, which the first doctor believed to be a sign of MS, is actually a fairly common, though not classic, symptom of gluten sensitivity.

    This story highlights the amount of work patients can face when they present with atypical symptoms of gluten-sensitivity. Many times, well-intended doctors can simply miss the dietary connection and get the diagnosis wrong.

    Do you have a similar story of well-intended, but misguided doctors wrongly diagnosing gluten-sensitivity or celiac disease? 

    Read more about Berger’s year-long Odyssey here.


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    Took me 12 years to get a diagnosis, and it wasn't from an M.D. So in the lightbulb joke vein:

     

    Q. How many doctors does it take to diagnose gluten sensitivity?

    A. One naturopath to diagnose, and 20 M.D.s to declare that the N.D. is a quack.

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    It's about time we talked about the "popular medicine's" attitude about celiac and autoimmune disease that is caused by food. I am celiac and a few other fun diseases. I was born with celiac and was sickly since birth. It took 45 years and many doctors being fired before my boss told me to seek a naturapath. I have been diagnosed with everything until she found 3 autoimmune diseases and my bowels were so messed up from "prescriptions" for diseases and mental health issues I did not have. Yes I was diagnosed with depression as well...oh and fibromyalgia (which is a non answer fashioned from ignorance and the pharmaceutical companies) and put on Cymbalta...which nearly killed me as it contained ingredients that caused the disease in the first place.......Please if you suspect a health issue of any kind...don't take the first doctors opinion....or the second or third....go to a Naturapath...research and find your own answers. I did it took me 6 years but now I am healthier (no trace of mental health issues).

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    Me, myself and I. And the doctors still stare at me and think I'm crazy when I tell them. If they only knew how much better I feel without gluten. No post nasal drip, no dry eye, no RLS, no heartburn, no insomnia, no bloated stomach, no IBS and best of all no meds for most of the above. Soon after indulging all symptoms resurface. Despite ending up in the hospital because of severe pain in my stomach on many occasions and having an endoscopy the doctors never even mentioned celiac or gluten sensitivity.

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    Thanks for addressing this issue. I have a 40 year old tri-athlete sister who is celiac with rash and severe numbing throughout limbs--diagnosed with too much protein in the blood and on prednazone and rituximab (chemo) Not working. I wonder why? NOT.

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    I had the classic celiac symptoms all of my life. First diagnosis, MD said I was just 'High strung', which was a way of saying, 'Nuts'. Many MD's later, I was diagnosed with Hashimoto's hypothyroid disease and anemia, which I do have. Later, Atopy and Atopic dermatitis. Many years later, a DO finally diagnosed Celiac, which was what I had to begin with.

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    I have suffered for years, since I was 35 and just this past year was diagnosed as border-line celiac. I am now 64 and finally have some relief. It was like a miracle, when I stopped eating gluten! No joint pain anymore and several other symptoms, including all the stomach problems that go along with it. I think the MD's ignore it because there is no money for them, they can't give you drugs to help, so they put off testing. Elivil did it for me, since going on it, I feel 99.9 percent better.

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    This is disheartening as I have only seen 2 MD's for my non classic symptoms on my so far 1 year journey. PCP has been very supportive and my Gastro is well, interesting. Gluten challenge is complete and endoscopy with biopsies were done last week. So we will see what the results have to say.

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    Pediatrician, 2 allergists, another pediatrician, immune specialist, and finally pediatric GI specialist--who has celiac. That's what it took to get my toddler son diagnosed. They made me feel crazy when I knew something was wrong. Never doubt a mothers instinct.

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    Took me 12 years to get a diagnosis, and it wasn't from an M.D. So in the lightbulb joke vein:

     

    Q. How many doctors does it take to diagnose gluten sensitivity?

    A. One naturopath to diagnose, and 20 M.D.s to declare that the N.D. is a quack.

    Same story for me!!

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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